The National Rheumatoid Arthritis Society (NRAS) has reacted angrily to the National Institute for Health and Clinical Excellence (NICE)’s decision will deny approximately 60,000 people with Rheumatoid Arthritis (RA) access to a range of Anti-TNF drugs and could blight them facing high levels of pain, the possibility of more surgery and long term disability.

NRAS is preparing itself for a flood of calls from distressed patients who are effectively seeing their future quality of life taken away from them.

“This decision is another nail in the coffin for the treatment of RA in England and Wales. NICE are re-writing the rules of RA treatment in this country ignoring the clinical effectiveness of drugs and ignoring the views of patients and clinicians.”

NICE are refusing to let patients have access to a second Anti-TNF if their first attempt at Anti-TNF therapy fails. Moving from one TNF therapy to a second and even a third has been established practice in the UK for some years, so this is not ‘new’ treatment which is being banned.

Together with the NICE decision in April to reject abatacept, they are effectively reducing clinically effective treatment options for people with RA from five drugs to just two. Patients diagnosed with the disease in their 20’s and 30’s could face 40-plus years with increasing disability and be forced out of work if access to these drugs is denied.

Ailsa continues:

“NICE is systematically taking away clinically effective and proven treatments from patients and giving them just one roll of the dice when it comes to Anti-TNF treatment.”

This decision flies in the face of the recommendations in Dame Carol Black’s recent report – Working for a healthier tomorrow – about supporting people to remain in work and the Department of Work and Pensions’ aspirations to have 80% of working age population in work by 2010/11

Ailsa, an RA sufferer herself for 28 years and who is on her third anti-TNF treatment which enables her to work 50-60 hours a week and run an organisation employing 14 people, is concerned that the views of patients have been totally ignored by NICE:

“The involvement and views of patients and patient groups in the NICE process is just a token gesture and is not taken seriously.”

“As a patient expert for many years now, I have attended at least 6 NICE Appraisal/Appeal meetings. I can confirm that with the exception of the Chair of the Appraisal Committees only on one occasion have I or any other patient expert with me ever been asked a question by any other member of the Committee – they seem fundamentally uninterested in the patient quality of life issues which matter to real people.

Any patients concerned about this decision can contact NRAS on 0800 298 7650 or visit the website: www.rheumatoid.org.uk.